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Providing support to anyone affected by blood cancer
By Ellie Philpotts
September is Blood Cancer Awareness Month and today, the 15th September, is World Lymphoma Awareness Day so Leukaemia CARE is helping to raise awareness of the impact of a lymphoma diagnosis.
Whilst the majority of people diagnosed with a blood cancer are adults, lymphoma, a type of blood cancer, is the most common cancer in teenagers and young adults aged 15-24. There are around seven teenagers or young adults diagnosed with cancer in the UK each day, 22% are diagnosed with lymphoma – that’s over 470 teenagers and young adults each year.
In early 2011, Ellie Philpotts was diagnosed with stage 2B Hodgkin lymphoma. Here, she’s penned down her thoughts and feelings about being diagnosed when she was 15 years old and how her life differed from that of a regular teenager during that time.
“Hodgkin lymphoma can easily masquerade as other, less serious illnesses. Its symptoms can be confused with other, more normal teenage issues like mild fatigue. For months I experienced this, as well as swollen glands and weirdly, itchy hands and feet. I put this extra tiredness down to being a typical student, as I was revising for my GCSEs whilst trying to keep up other areas of life like socialising and planning what I wanted to do once I’d finished school. After a while I began to blame my symptoms on a winter virus or cold.
After a while though, my symptoms got worse. I noticed a lump in my neck, I woke up drenched in sweat every morning and I felt breathless – even on the shortest of walks. It was then that I started to think my problems weren’t normal after all – although I never ever thought I had a blood cancer.
After a few repeat visits to my doctors – lymphoma is tricky to diagnose because the symptoms are so vague and it is relatively rare – I was eventually referred to my local hospital. After a couple of days there, I was then transferred to Birmingham Children’s hospital. After a week of scans, I was diagnosed with stage 2B Hodgkin lymphoma.
When I was eventually diagnosed, I actually felt relieved. Although finding out that I had a blood cancer was a huge shock, I felt I could then focus on starting to get better. After being diagnosed on the Friday night, I started my chemotherapy the next Monday, so I didn’t have much time to worry about my diagnosis or what was going to happen next. In hindsight, maybe that was a good thing!
Despite having stayed in a teenagers ward at Birmingham, I was actually treated on an outpatient unit with younger children. Here, I received chemo via a Hickman Line, alongside oral chemotherapy drugs and steroids. After receiving my treatment I had another scan that thankfully showed that I was no longer showing signs of active lymphoma so didn’t need radiotherapy. I think I was relatively lucky in terms of treatment but I did have the usual side-effects such as neutropenia, nausea, lowered immunity and hair loss (which were sometimes difficult to cope with, especially being a teenager).
“Birmingham Children’s Hospital has an excellent Teenage Cancer Trust centre and staying there made me feel like I wasn’t such an isolated case – being a 15-year-old confronted with cancer. I was lucky as I managed to avoid any infections whilst having chemo, and still went to school when I could. I was in Year 10, so I was determined to not fall behind with my GCSEs and this gave me focus throughout my treatment.
“It goes without saying that cancer has an impact on you emotionally. You’re hurled into unknown territory. You experience feelings of fear and anxiety which are only natural when coping with such a scary diagnosis. Your routine is disrupted; you have to prioritise hospital over school; you feel like you’ve lost control over your future; and your physical appearance changes. I guess your normal teenage life becomes unrecognisable. But it is important to stay as positive as possible and know that support is there for you, if you need it.
“I have been in remission since May 2011 and I appreciate how fortunate I am. In fact, this year marked my official all-clear, no signs of the lymphoma five years after my treatment. But blood cancer is still a big part of my life. It’s opened my eyes to the world around me and motivated me to help others more recently diagnosed. This is why I’m now passionate about promoting lymphoma symptoms to young people, because the quicker teenagers who have lymphoma are diagnosed, the quicker they can be treated and carry on with their normal lives.”
To help raise awareness of lymphoma, use the hashtag #WLAD today.